Crying, scared, blind-sided 50 year old.
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rita: Don't add the stress of feeling you must respond to others' posts . We know that you know we are all there for you. I am sorry about your horrendous experiences. It does get better as things fall into a routine. I hope you port placement won't be too traumatic. You'll be so glad to have it, especially if you have tiny, invisible veins. I'll check back for an update. Hugs.
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Rita - Thanks for updating us all; it's good to hear how you are doing.
Sorry if I made it sound like with radiation you would be totally naked - not true. You will likely be bare from the waist up for part of the time. Hope that clarifies a bit. Sounds like some places let you ask for only women, etc. I had to ask to be covered when not absolutely necessary, but they complied.
Also, I don't want to harp on this, not trying to force anything on you, but you do continue to talk about what you might be able to eat, so just this once again, I'm going to mention the FoodForBreastCancer site that I told you about before. You said that you had bookmarked it and might look at it later. She does note on that site different foods that are good for different kinds of cancer, e.g. triple negative, ER+, so you might want to take a look at it. She does offer some info from studies that show some foods working better for triple negative than others. Again, please only look at the site if you are truly interested and feel like it and I won't mention it again.
Also wanted to say, that like you, I can sometimes be called "negative" when I think I'm just being realistic, so I understand completely. I think there is a difference though between depressive, Debbie Downer, negativity and "realism". I think I am more of a "realist" than a "negative" person and you probably are too. I think your husband is probably just wanting to cheer you up and on and likely means well in stating that things look better to him than they do to you (you know him though, and I don't).
Almost forgot! Re all the needle sticks. It's part of the cancer deal. I don't have bad veins thank goodness, but I am a horrible needle phobe. Ask one of your doctors if they would prescribe some lidocaine cream for you (some call it EMLA cream). It comes in a tube and you can slather it on the places where they do blood draws (inside of elbow, etc) before they do the draw and it really numbs the area and helps big time in my opinion. You put it on thickly and cover it with Tegaderm or plastic wrap (whatever you have) until it's time for the needle stick. They can wipe it off when they do the alcohol prep before the needle stick. Some medical people have no idea what it is and find it weird and others know all about it and think it's great.
I was first given the lidocaine cream for my chemo port, because those needle sticks are really something else. I read about it on this board though, and no one at the medical places ever told me about it. I had to ask and then they were more than happy to prescribe for me. They also told me how to use it, but oddly they never offered it up front. I'm a big baby about needles and kinda/sorta embarrassed about using the cream for all the needle sticks, but I've decided I just don't care! It helps a lot. Apparently they use it at the children's hospital here a lot, but many medical people think of it being just for kids. Well since I'm a "baby" about needle sticks, it's for me too! I used it before both my Covid shots, and I've used it before IV's and blood draws and any other needle sticks. It really makes a difference - just make sure you've got at least a good hour between the time you put it on and the time they use the needle. One time I knew I would be getting an IV, but didn't know where, so I put it on in three different locations ahead of time. They only used one spot, but I just wiped off the others.
Sorry for the length, but wanted to share a few things.
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seconding ThreeTree’s suggestion to ask for a prescription for EMLA cream! That stuff is awesome. Totally pain-free needle sticks. The “press-n-seal” version of plastic wrap works great on top of it because it sticks to your skin without tape (especially if you’re like me who gets a rash from tape/bandaids/etc).
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I'll just "ditto" on the lidocaine. I was getting therapeutic phlebotomy sessions a few years ago for polycythemia. They basically drain a few pints of blood from you each time. The needle is a little bigger just to help with the blood flow. At my second session, the nurse asked if I wanted lidocaine. I said, "I don't know. Do I?" She said she always give it before a phlebotomy session. It was a tiny stick which stung a little, but then I hardly remember the needle for the blood draw going in. Also, they almost always warm up my arm before I get my Zometa infusion. I think it helps makes the veins a little easier to poke.
Carol
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Rita,
I am so glad that you are having the port placed. Gee, wouldn't it have been nice if they had placed it before all of these needle sticks! I am with the others in saying please do not feel that you need to respond to all of our posts! Our objective is to help you navigate a situation that we all have gone through. In a way, it is therapeutic for us to give back.
I understand not wanting to know. In my case, I needed to know if mine was metastatic (I have two teenagers and a husband who really needed this information), but outside of that, I didn't want to know percentages. I just took my Oncologist's recommendation every step of the way and hit it as hard as I could. That's all anyone can do. I recently was offered an experimental medication for my stage and am taking that too. There's solace in knowing that you've done everything you can to fight it.
I am hoping that starting chemo will help you feel better, at least in the face that you are killing the Cancer cells. My daughter made me a chart during chemo that allowed me to cross off the sessions. It helped a lot.
One more thing in regards to the Armor Hot Dog commerical ... Just had to post this for comic relief. (I am a master googler)
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Re the Lidocaine/EMLA cream, I too have been offered lidocaine injections before IV's, etc, but to me they hurt too! Go for the cream! I was in the ER once and they wanted to do something and I said I would like the lidocaine cream, but that it would take a good hour for it to be effective. The dr said they could numb me up with 3 lidocaine shots and I said, no, it's the needle sticks I'm trying to avoid. One IV or whatever it was going to be would be easier than 3 lidocaine shots in my book, but some would rather the shots.
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Scaredme - Thanks for the commercial. That was fun! Wow 1967, back in the day. I didn't know they had some of these old commercials on YouTube. I might take a closer look at some of them. I know we all had our problems back then too, but from my current standpoint those times looked so much more safe and secure. It's an illusion, I know.
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Rita, I have read your story today.
I am praying for you too! It is not an easy road, but it is doable, as women here, on this wonderful site, did it.
I am amazed and humbled by all support you are getting here.
I wanted to add that I am also thinking of you.
Peace!
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scaredme, thanks for the laugh. It was fun to see that commercial. It was followed by a commercial for Koolaid.
Rita, hoping today is a good day for you. They will come...
I, too, feel like I should respond to each poster, but I don't. Yeah, I feel guilty when others are so good at it, but that's how I'm wired.
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Ritac - I saw the subject line and I had to read it because the same exact thing is happening to me. Diagnosed at 51 after routing mammogram. I skipped 2020 because I got covid from another medical test I had done and I wasn't about to take another chance and I had never had issues before. I know how you are feeling emotionally. I was officially diagnosed mid September after ultrasounds, biopsies, MRI. I have surgery on 10/27, then chemo and radiation. I have positive axillary nodes per biopsy so not knowing yet if this has spread is my source of anxiety these days. I spend days crying as well but now I have some positive days thinking I will tackle this. I didn't sleep for days at a time but a couple hours. I am turning the corner on that now though. I think it's important I try to go into this with at least a small amount of positivity. I know though that this is difficult. As far as the family, what I found helped was that I set up a Caring Bridge page where I added e-mail addresses to those that wanted to be informed. This is where I update things and I am very frank with everyone about not wanting to know what their nurse friend recommends or their other friend that had breast cancer or things like that. I'm not ready for that yet. I am not ready to have lengthy conversations about my diagnosis yet. For the most part they are understanding and I realize that it is hard for them as well and often times don't know what to say. I found once I was diagnosed, I was not really receptive to positive messages or advice. Then I would feel guilty about tuning others out but ultimately, we have to get to a better frame of mind to tackle this and put ourselves first. I find this site very helpful. What has surprised me is all the support, even from people I hardly know offering to help. I live alone with no children and my family is several hours away. I moved right before the pandemic so I don't know a lot of people. Neighbors and the community has been wonderful. I hope you find some relief to your anxiety. What you are feeling is completely normal. Please get support from wherever you can. I know what you are going through.
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Rita,
Thinking of you today. Glad you are at the home stretch with all of your needle sticks and this week brings some clarity with your overall plan.
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Rita,
Thinking of you today. Glad you are at the home stretch with all of your needle sticks and this week brings some clarity with your overall plan.
Kristen
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Rita,
Thinking of you today. Glad you are at the home stretch with all of your needle sticks and this week brings some clarity with your overall plan.
Kristen
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Hi everyone,
Just sending this update your way. Today I finished all my tests, to my relief. I meet with my oncologist on Thursday and she will look over the results and start me on chemotherapy. It's been a busy week. Oct 11 I met my breast surgeon. Oct 12 I met my oncologist. Oct 13 I had an MRI on my brain (it took 3 different people and 5 hand pokes to get a vein in order to inject the ink solution - one unsuccessful needle per hand per person until third person came in). I have very small veins and only the most experienced people can do it in one try. I keep telling them this but everyone wants to try before calling in another nurse. Oct 14 I gave a blood sample for testing (got a vein quickly in arm). Oct 15 had a whole body bone scan and once again it took 3 different people and 5 hand pokes to get a vein. Oct 17 I was baptized at my church (The Crossing on Windmill Lane in Las Vegas). Oct 18 had CAT scan on chest, abdomen and pelvis. Needed solution injected into vein but person got it on first attempt in hand. Today Oct 19 I had an eco-cardiogram and surgery to insert a port into my chest so that they can put the chemotherapy drugs there. I had to be poked with a needle twice. Once for blood tests (got vein in hand on first attempt) and again during surgery (again took only one attempt). I thank God for the ease with which everything was accomplished.
Regarding surgery, the scheduler forgot to tell me not to eat 6 hours before my appointment. My appointment was at 10 a.m. I had breakfast at 9 a.m. So I had a choice to either cancel surgery or do it without sedation. I chose to go forward without sedation. But aside from the pain when they stuck me with a needle to Lidocaine up the area and the few moments when the surgeon was cutting me open, it wasn't too bad. My blood pressure was really high when I first arrived at the hospital and was about to give blood (needles tend to have that effect on me). It was 182 over something which I've never seen before. My BP is normally 130s over 70s or 80s. The nurse told me high BP was normal in the surgery department because everyone is nervous. But during surgery I relaxed, closed my eyes and pictured Jesus standing next to me and my blood pressure actually dropped to 144 over 70 something (without any drugs administered!). It was sort of a funny situation in post op. My blood pressure shot up again because I was panicked over the machine alarm beeping. It would beep every time my heart rate dropped too low. So it was back and forth me relaxing to lower my blood pressure and then panicking when my heart rate dropped too low. It went as low as 42 and the machine would start to beep at 50. But it would climb back up into the 50s and 60s once I'd panic. The nurse said not to worry about it as long as I didn't have any symptoms, which I don't. She said she sees numbers in the 50s from runners and other athletes (haha, imagine that).
But this "power port" that they installed into my chest will also help me avoid many of the needle pricks in the future. Such as those for MRIs and CAT scans. The only time I will have to get it in my arm or hands will be to give blood which hopefully won't happen for a while. I feel good today. I can't lift more than 5 lbs or do any strenuous exercising (not sure if that includes walking the golf course) for the next week in order to let the wound heal and I have to keep it dry but that's it. You can't see the port. It's basically is a little metal thing with a long narrow tube attached. They place it under the skin and then snake the tube in through a vein and into the heart. It's all sounds scary as I write it but oddly enough I've been at peace and not afraid this week. I listen to an audio version of the Bible each morning and it always leaves me with a sense of calm. It's also quite interesting and I've learned many new and amazing things.
Life is good. Live for today. Don't worry about tomorrow. And make sure you are in a good place because tomorrow is not guaranteed for any of us. Thanks for your thoughts and prayers.
RitaP.S. I've read all the recent posts and will respond to them at a later date. Just want to go relax for a bit. Regarding putting lidocaine cream on my hands to numb them, I asked about that and was told they don't like people to do that because it makes it harder to get a vein. So whatever, I'm done with most of it anyway.
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Just aword of caution. My port has been in place 9 years. I don’t let anyone but a chemo nurse or surgical nurse access it. Most won’t even try to. But for chemo it’s wonderful.
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Good to hear things are perking along! As for the port, almost all ports are power ports these days. As spookiesmom said, nurses need to be port access qualified. I never need to ask if someone is qualified since they don’t allow anyone who isn’t certified to touch ports. Mine has been in for 10 years and I’ve used it for every occasion possible except chemo (long story). I rarely even know it’s there. Take care.
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Hi Rita - Thanks for updating us all. It sounds like in spite of having a hectic week, you are "settling in" in a certain sense (not the best term I know, but I assume you know what I mean). Also very nice to hear that you have found some things that bring you peace and calm in the midst of this terrible storm. Sound like you've started to pace yourself a bit and I think that will really help you out a lot. Just real glad to hear that things are moving forward for you.
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Hi Rita. I am glad that you are getting to a better place. Regarding walking, you should be able to do it without issue after a day or so (At least that's what I was told). Also, they will do all of your blood draws through your port, so no more needle sticks from Oncology until (or if) you remove it at some point. The lidocaine cream is to numb the port area before they access it. Please ask again (your Oncologist should be able to write a prescription for you).. I found it to be a miracle cream for that. They use a big needle to access the port and it hurts without the cream (and I am not a complainer either!)
Hugs to you!
Kristen
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I second Scaredme's suggestion that you ask again about the lidocaine. You will really want it for the port! No medical person has ever told me, as you were told, that it makes things more difficult. They use it regularly at the children's hospital.
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Rita,
You could ask for the EMLA cream as suggested but many infusion centers have a numbing spray that they use. I have been told, by infusion nurses, that many patients use no numbing and are just fine, Twice my port was accessed without numbing and I hardly felt it but I am a big chicken so I still ask for the spray!
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Good morning fellow BC survivors,
My Thursday oncologist had to be rescheduled for Monday per the doctor's request so I'll just share a story with you. This is going to get personal lol. On Thursday, two days after my port was installed, and since I didn't have the doctor's appt to worry about, my husband and I decided to spend some fun time together. As soon as we arrived at our destination, I had to use the restroom. I've been doing my best to drink a lot of water which isn't easy at my weight. But walking each morning helps because I polish off 60 ounces right there. Anyway, it means I need to use the restroom often and we were in a public place so in I go and not wanting to touch the toilet seat, I assumed the position over it. However, being large breasted, I automatically grab them so I can make sure my aim is spot on. Well darn if I didn't jab my thumb right there at the port incision in my cheat, thumbnail and all! I freaked out and my husband freaked out. There was a mark (in the shape of a thumbnail) and there appeared to be blood around it and the incision seemed to have been impacted. I would guess I hit less than 1/4 inch above the actual cut. We contacted the doctor's office but by the time we were able to speak to a nurse, it seemed to be okay so I never really had to do anything with it but the situation could have been much worse. It's funny how often you do things without thinking. Its is 2 days later now and the area looks fine and is healing as before. I was lucky that I had a sweater on that protected the site from my germy fingernail. I'm doing my best to think before I move my hands now. It's not easy lol. I was laying in bed and my neck itched and wham, I went to scratch it and touched the neck incision (not hard thankfully). But having healing incisions sure is hazardous to your health!
Okay let me respond to a couple of the earlier posts which need responses.
ThreeTree Thank you for reminding me of the foodforbreastcancer website. With everything that has been going on, I completely forgot. I will surely check it out today. I have been eating healthy but also trying to lose weight so I gave up the nuts. I will continue to eat blueberries even though bears use them when they are trying to get fat for winter hibernation. But the nuts have to go because I can't stop snacking on them. Re the EMLA cream, I will ask my doctor about it on Monday. I normally wouldn't be a needle phobe but given my experiences with these tiny veins, it has a real effect on me. I mean my blood pressure at the hospital was higher during the blood draw than it was during the actual surgery, and that was without sedation! So I do think I need something.
marinochka Thank you for your prayers. It has been transforming for me these past several weeks. I was terrified at first (and it turned out for good reason) but I am very at peace now since strengthening my faith. I make sure I listen to the bible each day and it leaves me with such a sense of calm that I feel like I can handle anything. It has been the best medicine. However yesterday I cried for the first time in a long time. I received a call from a relative (who shall remain nameless) and she proceeded to tell me how my BC diagnosis had affected her. She told me how she went to her doctor and was revealing family health history (which there is a lot of bad stuff) but it wasn't until she got to me that her doctor flipped out. She didn't flip over me having BC but the triple negative part. She must have repeated the story three times, I suppose in an effort for me to comfort her and her fears. But I calmly explained that I would prefer not talking about it since it is I who have been diagnosed and face an uncertain future! I cried after hanging up though. I know my prognosis is not great but my faith in God will carry me through this. I'm not expecting a long life but I feel in a way that this BC has been good for me in the sense that it has saved my soul. I'm not sure I would have made it into Heaven had I not been diagnosed. It's easy to become overwhelmed with worries of the world. But knowing that I have a limited time regardless of how long I actually live, will keep me walking the straight and narrow for the rest of my days, and I thank God for that.
Debbie_R_MI I am so sorry to hear about your recent BC diagnosis. It's a good sign that you are having surgery right off. That probably means you are not triple negative like me. But I hear ya regarding how difficult conversations with others becomes when this enters your life. When I have strife, I like to face it alone. It's not like anyone can ever do anything to help. I have had strife way before this BC diagnosis and while everyone seemed concerned, nothing was ever done to actually help me. I do understand how you might feel alone because you recently moved and live by yourself but you are NOT alone when you have this great group of women on here supporting you and I'm sure you can find BC support groups in your area. And if you are religious, turn to that. Reach out and you will be comforted. Believe me, you could live in a house full of people with relatives right next door and have less support than you do just by checking in on this website! If you've read my previous posts, you know that I live in a city with three aging parents that I've been looking after. One is 86, one is 81 and the other is bed bound and paralyzed at 72 with no family or friends within a 5 hour drive and no support whatsoever! So I get where you're coming from. But you can beat this. I hear it all the time that BC treatment has improved leaps and bounds just from a few years ago. Be happy we're in the 21st century.
Spookiesmom exbrnxgrl and scaredme Okay I'm confused about the port thing now. I was looking forward to less needle pricks. Spookiesmom, do you have a "power port"? Because that's all they install at my hospital. And the man at the CAT scan place said they are not allowed to work with regular ports but they are certified to work with power ports. I'm not sure what the difference is but anything to keep them away from my hands would be great. I was told I would still need to give blood through my arms/hands (scaredme, I hope you're right about the blood draws through it too!) but that everything else...MRIs, CAT scans, etc could go through the power port.
That's it for now. I have a list I've written down to ask my doctor on Monday and have included the lidocaine/EMLA cream. I had another question as well but I forgot it before I was able to get to a pen and paper (darn my poor memory!). Hopefully I will remember before Monday. Have a great day everyone!
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Blood draws for my MO are done by chemo nurses in his office. Labs for anyone else are done in my arm, by regular staff. My last surgery it was accessed by a surgical nurse. Most aren’t qualified to access it, and I won’t let them.
At a past PCP office, much closer to home, I agreed to his RN to do a draw. Been a while for her, so supervisor was there too. On their 3rd try, neither could do it. I said they were done, and changed PCP shortly after.
Chemo nurse sprays it, stick, done.
I’ll be having cataract surgery soon. Sedation will not be done through port.
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rita,
A port doesn’t spare you from a needle stick but the needle penetrates a thin layer of skin, not a vein. I think most centers offer a numbing spray which works very well. I used EMLA the first time my port was used but found the spray works just as well.
A power port means that it can be used to inject things into the body, such as chemo, or draw things out, basically blood. In the US, I think almost all ports that are currently used are power ports.
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".... I received a call from a relative (who shall remain nameless) and she proceeded to tell me how my BC diagnosis had affected her. She told me how she went to her doctor and was revealing family health history (which there is a lot of bad stuff) but it wasn't until she got to me that her doctor flipped out. She didn't flip over me having BC but the triple negative part. She must have repeated the story three times, I suppose in an effort for me to comfort her and her fears....."
Dear Rita, I am recently diagnosed with BC myself, also an aggressive type so going through chemo first, one third through as of today. I had been reading your story but didn't answer until now, the reason was because we have so many more knowledgable members in the community and they had been keeping you really good company.
That said, this last part you wrote, I felt the need to comment. BC is my second "C" word, I had been diagnosed with Hodgkin's Lymphoma 10 years ago and while going through that ordeal, I lost most of my friends. The reason was exactly this, they kept on putting their fear over our relationship. This unnamed relative of yours reminded me of them and not in a good way.
Once I read a nice model/rule to remind the people around me. It goes like this: There are circles of people and you are in the middle of it. Circle #1 around you are the closest people, your husband, your parents, maybe your best friend. Then the second circle (it is placed out of circle #1) is people who are a little further, perhaps closest relatives and your close friends. Circle #3 (draw it outside of circle #2) who are people you see once a while, might be your co workers etc. The rule is: The people are only allowed to rant/complain to people who are in outer circles compared to them. So you can rant to everyone, circle #1 can rant to circle #2 but not to you, circle #2 can only complain to #3 but not to #1 and #2 and it goes on like this. Hope I managed to describe it well.
Either way, how selfish and pitiful is to call someone who is trying to deal with a cancer diagnosis and tell them how much you are afraid to get one. Don't let such people get to you. Surround yourself with those who help and support you instead of burden you more. I read that you had been selfless in helping others for all those years, now it is the time to care about yourself and ignore whoever you wish to without feeling bad about it.
Hugs.
Sarah
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Hi Rita - Re the lidocaine cream, it's interesting to hear what others have had to say. I had never known there was a spray until I read it here recently. I just got my Covid booster on Thursday and I used my lidocaine cream, which of course helped a lot. At that time I mentioned to the nurse that I had read about a spray that some places use and she said the hospital where she used to work used the spray, but that she thinks the lidocaine cream that they use where I went and she works now, is better. Some here have said they think the spray is better.
Yes, I think most of us all get power ports now. Like others have said, you can get blood draws and more done by using them. They used mine for the anesthesia I think when I had my surgery. Just be sure to use the cream before anyone accesses the port, because that needle punch in the chest they do to access the port can be unpleasant to say the least, without any numbing ahead of time. Also want to underscore what others have said here about all nurses not being able to access a port. The ones who do have had special training and once in awhile you can wind up in a situation where there is no one trained to access it available. Then they have to use your veins. I never found myself in that situation, but it can happen. A chemo place won't be like that, but I was in the ER once and the regular nurse there had to go get a trained nurse when the port became involved. Also, after my surgery during the time I was staying at the hospital my regular nurse would have to go and get a specially trained nurse if they wanted to access the port at all.
Re the FoodForBreastCancer site, I just didn't want you to think I was harping on you about it or insisting in some way that you look at it. That's why I promised I'd never mention it again. It's just that you had mentioned food a bit, so I thought you might find it interesting/helpful.
Enjoyed your amusing story about the public restroom and just glad you did not actually hurt yourself in any way.
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Hi Rita,
I have to say that I had a similar situation with my sister after my diagnosis. She was absolutely in a state of fear that she also had breast cancer, even ordering a breast MRI to check for it and mentioning daily how terrified she was! My thought at the time was that even if she were diagnosed through the breast MRI, it would be very early stage and there's no way that it would be the severity of what I had to deal with. At one point I mentioned to my mom that I could not be the one to be her councilor though this - I was going through enough!!!! My mom was very sympathetic and passed the word onto my sister... I love the circle comparison.. So accurate!
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Hang in there, Rita. Most of us have been where you are. I also had a power port and I never used any cream, spray or anything else. I never found the port access stick to be much; just a minor stick and it's done.
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I used the lidocaine cream. I would put it on an hour before (it took 30+minutes to get there) and cover it with press and seal wrap. That stuff sticks really good to your skin. By the time I got in for the chemo, it would be totally numb. I don't remember if they offered a spray
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i have used EMLA alone, EMLA with the numbing spray and nothing at all!
-Of course, the EMLA works beautifully but you do have to get a prescription for it and plan to apply and cover it in advance.
- EMLA plus the spray = overkill. I only did this once and realized how redundant that was!
- Nothing… This happened by accident and it was a non-event but I still request the spray.
I love EMLA but the spray works just as well and requires no prescriptions or prep on your part. EMLA is much more long acting, but it takes about 5 seconds to access the port, the actual needle stick, so you don’t need something long acting. I would be very surprised if an infusion center did not have the spray as an option. Take care.
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My nurses use the spray. They have everything ready to use, say deep breath,, and stick. I feel a little pressure. They do their thing, maybe a minute or two. Tell me deep breath, out and done. No biggie.
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